Capturing the perspectives of African American informal dementia caregivers: a phenomenological study

ABSTRACT

Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers’ experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers’ experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia.

KEYWORDS:

• Dementia
• African-Americans
• lived-experience
• informal caregivers
• phenomenological study
• racial and ethnic minorities

SUSTAINABLE DEVELOPMENT GOALS:

• SDG 3: Good health and well-being
• SDG 4: Quality education
• SDG 5: Gender equality
• SDG 9: Industry, innovation, and infrastructure
• SDG 10: Reduced inequalities

Introduction

Alzheimer’s disease and related Dementias (ADRD) take a heavy toll on older adults and their families (Alzheimer’s Association 2021). African American older adults have a higher prevalence of Alzheimer’s disease and related dementias than non-Hispanic White older adults (Alzheimer’s Association 2021). African American People Living with Dementia (PLWD) are more likely than others to live in high-poverty communities with fewer dementia care support resources and have higher rates of unmet needs compared to their non-Hispanic White counterparts (Gaugler et al. 2005; Gaugler et al. 2009). Meeting the care needs of PLWD and their caregivers is multidimensional and complex as care needs vary by level of cognitive impairment, family dynamics, functional abilities, medical comorbidity, cultural barriers, and socioeconomic status (Alzheimer’s Association 2019). Dementia care has improved over the years; however, racial and ethnic minorities continue to experience deep and persistent inequities resulting in higher health disparities (Larson and Stroud 2021). Nearly half of all caregivers who provide help to older adults are providing care for PLWD, and 82% of the help comes from family members, relatives, or other unpaid caregivers (Alzheimer’s Association 2021).

African American caregivers

Informal caregiving is a significant mode of providing dementia care in African American communities. In the United States, African Americans comprise one-tenth of the 15 million family caregivers for PLWD (Alzheimer’s Association 2019). In general, African American caregivers for PLWD spend more time and experience a higher burden and challenges from caregiving than non-Hispanic Whites (Alzheimer’s Association 2019). African American caregivers are also actively caring for other members of their family including children and grandchildren (McCann et al. 2000).

Cultural, historical, and spiritual dimensions

The impact of historical contexts on African Americans’ health disparities is significant. Inequalities in health that have shaped African American experiences for centuries include the effect of slavery on the development of families and churches as primary support institutions; the impact of the U.S. Public Health Service Syphilis Study at Tuskegee and Henrietta Lacks’ story on the mistrust towards researchers and health systems; and the effects of implicit, explicit, and structural racism on mental and physical health.

Furthermore, previous research findings based on a sample of non-Hispanic White caregivers about the nature of their dementia caregiving experiences may not be accurate for other racial and ethnic minority groups. Because of their unique caregiving challenge, African Americans deal with the caregiving burden differently than other groups (Armstrong et al. 2019; Scott et al. 2020). African Americans’ expression of burden, distress, and coping is rooted in the philosophical orientation of their culture (Dilworth-Anderson, Goodwin, and Williams 2004). Studies have indicated that African Americans use positive appraisal when dealing with caregiving difficulties and more internal coping strategies (Knight and Sayegh 2010). These include their reliance on a religious belief system and dealing with situations in favorable terms (Levkoff, Levy, and Weitzman 1999; Segall and Wykle 1988). The church plays a significant role in African American communities, especially among older adults who often have higher church involvement and attendance. Studies have indicated that African American older adults engage with the church to help them reduce the effects of stressors such as financial difficulties and health problems (Krause and Van Tran 1989). For example, African American caregivers tend to utilize members of their network more frequently and see caregiving as a traditional family value and an act of family duty and responsibility (Sterritt and Pokorny 1998). Moreover, it has been noted that African American informal caregivers report less depression than White caregivers report and have greater self-efficacy in managing caregiving problems (Haley et al. 1996). Social, cultural, and religious factors explain the relative resilience to caregiving burden among African American family caregivers. However, highlighting the strengths of African American caregivers should not undermine addressing the complexity of African American caregiving experiences. The differences in reported burden are better explained by cultural differences in social support and coping (Knight and Sayegh 2010). African American cultural values of familism and filial piety influence the appraisal of stress and coping (Knight and Sayegh 2010). Thus, it is essential to understand the cultural values and norms that shape the caregiving role of African American informal caregivers.

This study aims to describe the lived experiences of informal caregivers of African American PLWD to understand their perceptions of dementia and dementia care, caregiver support needs, and services by conducting in-depth interviews and analyzing diary entries. The knowledge gained from understanding the lived experience of African American dementia caregivers is crucial because it will provide the information needed to tailor interventions aimed at improving services and support programs.

Methods

Design

Interpretive phenomenological qualitative inquiry was used in this study to understand caregivers’ lived experiences and needs (Matua and Van Der Wal 2015; Smith and Osborn 2015). Our study employed interpretive phenomenology to explore caregivers’ experiences with dementia. This approach allowed us to delve deeply into their subjective insights and meanings. We chose interpretive phenomenology due to its compatibility with our exploratory study, aiming to capture the complexity of caregiving experiences and uncover underlying themes. Through iterative analysis, we aim to shed light on the emotional, social, and practical dimensions of caregiving. In summary, our methodological choice enables us to gain valuable insights into caregivers’ lived realities, contributing to a deeper understanding of their needs and challenges.

This study combined in-depth interviewing and a diary study approach to document and interpret caregivers’ experiences. Purposeful sampling was used to recruit 10 informal caregivers that provided rich information and allowed for an in-depth understanding of the experiences, challenges, and needs of caregivers. Using criterion sampling, six of these caregivers were selected for providing rich information and detailed description of their daily caregiving activities during the in-depth interview. These study participants were invited to keep structured diaries of their experiences of caring for their family member with dementia. The five participants were contacted via email by primary author to see if they are interested to participate in diary entry activity. Once participants consented to keep diary then they were given specific guidelines to address for a total of seven days. These diary notes were designed to complement information gained from in-depth interviews.

Interview guide

Our interview guide drew from key theoretical models in caregiving and dementia research, including stress and coping theory, social support theory, and person-centered care theory. Stress and Coping Theory by (Lazarus and Folkman 1984) informed our understanding of how caregivers perceive and manage the challenges of caring for individuals with dementia (Lazarus and Folkman 1984). Social support theory, developed by (House 1981) and others, guided our exploration of the types and sources of support available to caregivers (House 1981). Additionally, Person-Centered Care Theory, advocated by (Kitwood 1997) and others, shaped our investigation of caregivers’ interactions with care recipients (Kitwood 1997). These theories enabled a comprehensive exploration of caregivers’ experiences, coping strategies, social support networks, and interactions with care recipients. Overall, the integration of these theories enriched our study design and facilitated a nuanced exploration of caregivers’ experiences in the context of dementia caregiving.

Regarding the guidelines for the diary notes kept by caregivers for seven days, participants were provided with prompts and instructions to document their daily caregiving experiences. These prompts encouraged caregivers to reflect on various aspects of their caregiving role, including the tasks performed, emotions experienced, challenges encountered, and any sources of support or respite utilized (Hyers 2018).

Data collection

Data were collected between July and December 2022. The recruitment of participants occurred through online invitations, direct solicitation, and recruitment advertising on Facebook and Instagram. Participants were sent a detailed study invitation letter and consent forms. Participants signed and returned consent forms before the interview. Interviews were offered via Zoom, but in-person interviews were an option if requested by participants. All participants agreed to be interviewed via Zoom. The interviews lasted between 40 and 60 minutes.

Data analysis

The data analysis employed content analysis procedures to identify patterns and themes. Zoom’s online transcription tool facilitated the transcription of in-depth interviews, which were subsequently verified for accuracy by the first author after listening to all video/audio recordings. Transcripts were then meticulously read multiple times and coded using a phenomenological analysis perspective by the first author. To maintain confidentiality, transcripts were stripped of identifying details before analysis, and all data were securely stored and accessible only to authorized research team members throughout the study process.

Interview data underwent meticulous sorting and examination to isolate meanings, identify patterns and categories, and develop themes. The initial themes representing caregivers’ experiences and their needs in caregiving were reviewed and refined by the second author, with finalization and labeling of themes achieved through input from the third author. NVivo qualitative analysis software was used to organize codes and themes (Lazarus and Folkman 1984). Similarly, diaries were analyzed using content analysis methods, with NVivo utilized for data organization. Descriptive statistics were employed to summarize caregiver demographic characteristics. We conducted member checking as part of our data analysis process to enhance the credibility and trustworthiness of our findings.

Results

Demographic information of participants is presented, followed by the themes that emerged from the in-depth interviews, the results from the diary entries, and the triangulation of data from in-depth interviews and diary entries. Four themes emerged from the qualitative analysis: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Each of these themes and their associated patterns are described in detail. These themes represent the complexities involved in providing dementia care for a family member with dementia and how caregivers balance the different aspects of their role.

Participant demographics

All participants were African Americans (100%, N = 10) and most were female (90%, N = 9) caregivers who were close family members of the PLWD. Most of the caregivers (70%, N = 7) were between 46 and 64 years of age, were married (60%, N = 6), and had been providing dementia care for more than 2 years (70%, N = 7). Table 1 below shows the demographic characteristics of caregivers.

Table 1. Demographic characteristics of participants in the study (n = 10).

Descriptive variable	n = 10 (100%)
Gender
Male	1 (10%)
Female	9 (90%)
Relationship to PLWD
Adult Child	7 (70%)
Grandchildren	1 (10%)
In-law daughter	1 (10%)
Spouse	1(10%)
Age range
31–45 years of age	3 (30%)
46–64 years of age	7 (70%)
Marital status
Married	6 (60%)
Never married	3 (30%)
Separated	1 (10%)
Length of caregiving
13–12 months	1 (10%)
6–12 months	2 (20%)
>2 years	7 (70%)
Education
High School	2 (20%)
Associate or technical degree	1 (10%)
Four-year College	2 (20%)
Master’s degree	4 (40%)
Professional (JD)	1 (10%)
Occupation
Full-time Employment (≥30 hrs. per week)	8 (80%)
Full-time homemaker	1 (10%)
Retired	1 (10%)
Salary range
$24, 255 –$48, 500	2 (20%)
$48,501 –$72,750	2 (20%)
More than $ 72, 751	6 (60%)
Overall Health
Good	8 (80%)
Very good	2 (20%)
Overall mental or emotional health
Fair	1 (10%)
Good	6 (60%)
Very good	3 (30%)

In-depth interview

Themes

Our data analysis revealed four prominent themes: caregiver burden, familism, lack of information and community-based resources, and the desire and need for culturally appropriate community-based resources. Furthermore, we have included a supplementary table that outlines these themes and patterns, along with selected quotes from the participants, providing a comprehensive overview of the qualitative findings.

Caregiver burden

The first theme focuses on the impact of caregiving on the participants. It includes four patterns: Demand of caregiving, Dynamics with family members, financial burdens, and Coping strategies. Themes and patterns with selected quotes from the participants are reported in.

Demand of Caregiving: Caregivers experienced a multitude of challenges that impacted their caregiving role. The majority of caregivers provided all or most of the care themselves. Caregivers provided emotional, physical, financial, and social support for their family members living with dementia. In average caregivers provided long hours of care per week and helped with ADLs and IADLs. Participant 8 described the burdens of caregiving as follows:

Caregiving is like a hard job. It’s like a bunch of jobs in one like I said, you’d have to feed, bathe, wash clothes, shop, all that kind of stuff, and it changes so much over time … And it is hard because it’s kinda, you’re caring for a toddler who has life experience. So they still have their own experience. They still want to do things their way, they still want to have an opinion.

Caregivers are often unprepared for the responsibilities of a caregiving role. They reported hardships including challenges that were related to providing physical care, or safety concerns such as wandering. Participant 1 stated:

I make sure he had food, make sure that he had taken his medication that he had not wandered off, you know that type of thing.

Participant 3 explained the difficulty of balancing work and caregiving for the PLWD, stating:

But you know, I have to quit my job because I can’t make her get up in the mornings to get her to work. I can’t just drop her off somewhere, so I can get to work on time, you know.

Participant 5 said:

And you know … I wanna quit every day, every day in my mind. It’s like a struggle. What can I do with them? How can I give? Go to another house, or rent another house and get away? But then ultimately, my heart comes back in and stuff and nope, this is for the long haul.

Additionally, most of the caregivers experienced a lack of time for themselves and not having enough rest from their caregiving role. They cited their limited time that burdened them in their caregiving role. Quotes from participant 1 and participant 3 illustrate this burden:

You know it’s hard to work 8 hours out of the day, and then go straight into caregiving mode, but you, you do what you have to do because there are no alternatives at that point

[Participant 1]

Another caregiver explained:

The most difficult part is getting some free time for myself or free time with my children.

[Participant 3]

Dynamics with Family Members: Caregivers reported lack of shared caregiving responsibilities among family members. Caregivers mentioned that they were often the sole unpaid caregiver for their loved one with dementia. They pointed out that, being the main caregiver; they often bear the brunt of dementia-related anger from the PLWD.

For example, participant 1 stated:

Your family support is key, suppose something happens to you as the primary caregiver, and that other sibling is not involved. They have absolutely no idea what’s going on or what to do, you know, with the loved ones.

Caregiving burden also impacted caregivers’ family relationships. Caregivers noted that their relationship with their family members had broken down, often due to lack of understanding. Participant 5 caregiver described family conflict:

 … And so that hurt me, and it severed a lot of relationships because I felt like, well, you ought to know my character, because not only have I taken care of my aunt, Mama. I’ve done things to take care of these people, too. You should know my character well enough. Well, I wouldn’t do anything like that but [it’s] my own father. He was like that, too. He believed the things she was saying. Things that caused arguments between my father and I.

Another caregiver explained the devastating impact of dementia on his family, which added long-standing stressors. Participant 2 stated:

I really didn’t realize it rips, it kind of rips families apart, because it does, it devastates it. It devastated my family. So it rips your family apart, so I thought maybe the doctor’s diagnosis was enough.

Caregivers also experienced loss of previous relationships they had with their siblings and other family members. Participant 1 sharing highlighted this:

The siblings, there is nothing but conflict. There is no togetherness as well as in my family. You know, I, we take care of my father-in-law, which is my husband’s dad, my husband and his brother, they don’t get along, they haven’t spoken, had a civil conversation since all this started. It’s because of things that, that they think we’ve done. So it’s caused a lot of conflict and when you have that type of conflict, you can’t work together, you can’t do the greater good, or what used to be done for your loved one. [who was diagnosed with dementia]

Caregivers also reported that some family members saw dementia either as a normal aging process or as something bad and shameful. Caregivers explained their family members’ fear of being stigmatized by their neighbors, friends, other relatives, and the community. Most caregivers tried not to disclose dementia condition of the PLWD. As one of the caregivers [Particpant1] explained:

I’ll be real honest with you, you know, people of color, and I’m speaking of people of my color, we are very reluctant to seek help … very reluctant … we … ah … one we don’t want to acknowledge it a lot of times, we’ll just go … . Oh, that’s just my crazy aunt, my granny or, you know, and that’s just the way they are … You just have to ignore them.

Financial Burdens: A few caregivers reported some financial burden due to lower average household incomes and lack of health insurance coverage which adds to caregiving burden. Even though most of the participants in this study had higher than average income, caregivers still faced regular out-of-pocket costs. Participant 8 simply put it:

We don’t have a lot of money.

Coping through their Faith in God: On the other side of challenges, caregivers also described rewarding aspects of their caregiving roles, and how their faith played a significant part in coping with their stress. For example, one caregiver [participant 1] expressed:

If you don’t have faith before this, you would prop … My faith, to be real honest is probably the only thing that’s kept me from [expletive] … It was a whole lot of praying that got us through … . and so when I tell you, faith kept me grounded on many levels

Caregivers reported greater attendance at religious services and using prayer to cope with the stress and burden of their caregiving roles. All of the caregivers stated being close to God, and using their Christian faith to deal with their everyday struggles. The church played a supportive role for most of the caregivers by serving as a place to express one’s feelings, providing an outlet to cope, and offering emotional and spiritual support. Despite the important role the church played, some caregivers reported being unable to attend church as the PLWD’s behavior became more problematic. This contributed to the burden of caregiving because caregivers become unable to relay on the in-person spiritual, emotional, social, and material support that the church once offered them during their hard times.

Familism

The theme of familism included three patterns: filial obligation, cultural values, and home-based care. These patterns are described below in detail.

Filial Obligation: Participants placed strong value on familism, family responsibility, sense of duty and obligation, feeling of loyalty, and reciprocity for their caregiving role. Caregiving was seen as an expression of traditional values, an act of love for the PLWD, as repaying the debt to a parent for being cared for as a child, as continuing a family tradition of mutual concern, and/or setting an example for one’s children. Caregivers reported that caregiving was fulfilling filial obligation or spousal responsibilities of care.

The following quotes make it clear why caregivers provided care to their parents:

I believe in honoring my mother and father, and it is my duty and my obligation to give them whatever they need. [Participant 7]

She took care of me, so why would not take care of her? [Participant 3]

Connection to Culture: A few caregivers explained the connection of family obligation to culture. Participant 7 said:

That is because of our culture, our culture is to take care of one another, I mean we are raised to take care of one another, and, you know, it’s hard for us to let workers in.

Participant 4 wanted to set an example for her children:

I’ve got three sons, and for them to see me taking care of my father, I think is important, I think it’s important for them to see that.

Caregivers stated that the sense of responsibility and obligation not only motivated their caregiving role, but also gave them strength to continue their caregiving. Thus, familism obligation and religiosity were main motivators for caregiving. Caregivers described their religiosity and spirituality as one of the main reasons why they care for their loved ones with dementia. Many of them see their caregiving role as ‘joy’, not a ‘burden’ to take care of a family member with dementia despite the many caregiving demands. For example, participant 9 said:

I mean, we believe in God, pray, and as difficult and challenging things are, I just feel that you know God doesn’t put more on us than we can handle. It doesn’t seem like a lot.

I want to talk to someone on a one and one basis, and so now I just talk to God. I just, you know, I don’t feel like screaming like I used to.

Preference for Home-based Care: In alignment with a strong belief in family responsibility to care for a loved one with dementia, caregivers wanted to keep their family members with dementia at home instead of placing them in long-term care facilities such as nursing homes. Moreover, caregivers expressed a negative attitude towards nursing homes. Participant 8 highlighted:

My grandma worked in nursing homes when she was younger and she saw that the residents experienced in terms of abuse. So she is like fairly adamant that he will not go to a nursing home.

Most suggested providing home-based care for their family member with dementia. For example, participant 10 said:

I think it’s important, especially for people of color, to keep our loved ones at home. Nobody is gonna take care of them the way we will, nobody’s gonna take care of my father in law the way I can, it’s important to me that they stay home as long as they can. Because it’s familiar, it’s the site, it’s a place of safety, it is their comfort zone.

Lack of information and community-based resources

This theme included three patterns: inadequate and lack of knowledge, lack of support, and lack of community resources. These patterns are described below in detail.

Inadequate Information and Lack of Knowledge: Caregivers reported that they had no information regarding managing dementia care for PLWD from their community, medical care providers or other dementia service providers. Other caregivers noted that the lack of knowledge of dementia service and programs hindered their caregiving roles. Most of the caregivers described that lack of information on dementia care and services made it difficult in providing the best care for their family member with dementia.

Several of the caregivers explained:

So, the knowledge of the resources is very, very limited. [Participant 7]

You know I had no knowledge. It was very frustrating. [Participant 9]

 … there was none [information], and there was some I did not know, and I didn’t know how to access it … as a caregiver I just didn’t know where to tap into that information. [Participant 10]

Lack of Support: All caregivers also reported lack of support, education and communication from healthcare professionals. They expressed lack of consistent guidance and support from healthcare professionals. Caregivers cited lack of reliable support from healthcare professionals on what to anticipate during hospital visits and poor communication during hospital stays. Several caregivers reported experiencing a hostile interaction with health care staff or service providers in healthcare settings.

Two caregivers noted:

I really don’t feel like the hospital staff was like super receptive to hearing about that issue … they didn’t really seem too concerned with helping that issue. [Participant 8]

I felt the most irritated was a hospital visit where no one seemed to read the chart so they’d come in and say, ‘Are you in pain?’ [Participant 7]

More than half of the caregivers interviewed expressed the difficulty of navigating resources, as they discussed their caregiving role in the community. Caregivers expressed the difficulty of navigating the application and enrollment process for eligible services which can be burdensome. Emblematic of these comments was Participant 1 who stated:

 … its’ kinda sometime, it’s a little hard to navigate things and try to figure out.

For caregivers whose time and emotional capacity is already stretched, these problems add more layers to their complex caregiving role. Even when formal dementia services and support programs are available, their mere existence does not ensure that caregivers are eligible or can access or make appropriate use of such programs. Although caregivers desired information, they also reported significant barriers to accessing those resources to help them with their caregiving roles. In addition to eligibility criteria for dementia services, caregivers consistently stressed that it was important that service providers be trained in dementia care needs.

Lack of Community Resources: Many participants in the study had no prior knowledge of dementia-related community resources. Caregivers expressed lack of community resources needed for the care of their family member with dementia. Two caregivers highlighted:

There was just no resources available to us or resources that we knew nothing about. [Participant 2]

We had no idea … we didn’t know where to go. [Participant 6]

Caregivers reported underusing formal support services in their community or lacking awareness of the availability of those services and support programs. Many caregivers reported they are not eligible for the services and support programs they want or need, due to the characteristics of the PLWD or the caregiver themselves such as age, severity of dementia condition, or socioeconomic status. Other caregivers expressed barriers to insurance or its ability to pay for dementia services and support programs. While some providers reported ‘having good insurance’ or expressed positive sentiments such as, ‘our insurance will take care of it,’ many caregivers lacked good insurance, and expressed frustration with eligibility criteria for dementia services and support programs as well as inequality of access to services.

Desire and need for culturally appropriate community-based resources

This theme had three patterns: learn about resources from trusted sources, receive high quality and culturally respectful care, and advocacy.

Learn about Resources from Trusted Sources: This study found that caregivers desired more community resources to assist with their caregiving responsibilities. They also desired to learn about resources from trusted sources such as churches, and community organizations, including the Alzheimer’s Association. One of the common suggestions for making resources more accessible to caregivers and PLWD was to make resources available through local churches. For example, two caregivers shared:

As black people we go to church like nobody else … ask people in the church if they know anything about [dementia resources]. [Participant 10]

If there were other programs, they should go to faith-based communities, churches, or whatever. [Participant 5]

Another suggestion for community resources that could help fill this need for caregivers was therapy. Although caregivers expressed willingness for therapy, they were also reluctant in seeking help. For example, one caregiver commented:

People are extremely reluctant to seek help on just other types of mental illness. So they definitely don’t want to go seek help on the Alzheimer’s front. [Participant 9]

Caregivers repeatedly cited ‘word of mouth’ as the most important source of information about the resources needed to improve dementia care in their communities. For example, participant 6 said:

Word of mouth is a good way to seek help … just different networking and word of mouth is always a good way to seek resources.

High quality and Culturally Respectful Care: Caregivers also expressed that if they sought outside support for dementia, they would want the PLWD to receive high quality and culturally respectful care. This was because of concern emanated from their experiences of discrimination observed in institutional settings.

A typical comment describing the way caregivers experienced mistreatment and discrimination was that:

 … we were in a hospital but nobody really cared to really address that part of her illness, and I know that was like discriminatory. But in my experience, and what I know, it does seem that, you know, if we were in a different race, it seems like those issues might have been taken more seriously. [Participant 8]

Participant 10 commenting on the mistreatment experienced stated:

 … make sure that it’s the right, this decision, because we don’t, we have been mistreated and abused so much, that you don’t know what is truth.

Nevertheless, caregivers insisted that they have not experienced explicit or overt racial bias from healthcare providers, but expressed they received poor healthcare services and were sometimes treated differently. For example, Participant 8 stated:

I have personally, but I don’t feel like I’ve had so much of that with the scope of this [dementia]  … I didn’t feel like I had any of those issues, I mean it may have been there.

Another caregiver, when taking about her father’s bad services experience in the hospital, commented:

I think, had it been a White man of privilege, I think he would have received some different care  … A different color, that they would have kept them as 24 hour observation. [Participant 2]

On reflection, caregivers were able to suggest a wide range of resources to make dementia services and support more accessible to their community. However, two suggestions were common: to have adult day centers, and to use social media to gain information. Caregivers also advised doing their own research to seek help and get support services from providers. In general, caregivers reported greater need for daytime respite, skills training, adult daycare centers, and support groups for African American caregivers. Caregivers believed that support groups made up of mostly African American caregivers promoted a sense of authenticity and familiarity among them. Thus, caregivers had a strong desire to connect with other caregivers who understand their cultural tradition and community. Echoing this concern, participant 1 acknowledged:

A support group of color, because there are things that, that we can talk about and be free, that we just cannot when we are in the support group with our White brothers and sisters. You know. I have had groups with all that people and all White people and mixed and the conversation is extremely different when there is a mixed group. When it’s all people of color, we can holler and say things and clown around and act up in a way that only we can get and we understand.

Advocacy: Caregivers also asserted that the need to share information about community resources and their caregiving experience in their community was important. Caregivers indicated that advocacy was an important part for making resources available in their community. They stressed the importance of asking questions during hospital visits and learning how to navigate and manage interactions with the health care system.

For example, participant 7 expressed concern in the following ways:

But I also think that we have got to get the African American community to talk about it. It is a must that we share our experiences as painful as they may be. As hard as it is, to realize or to understand that it’s very, very helpful when I talk to somebody, and they’ll be like, oh, my dad had that.

Some of the caregivers also expressed a strong desire for opportunities to socialize. For example, participant 9 commented:

Community-based resources where my mom is able to go out and socialize. So being able to be out and have activities that she can enjoy in spite of her, you know, decreased mobility and those sort of.

Therefore, caregivers felt that it was particularly important for their family members with dementia to interact with others like them in their community.

Diary entry

Entries into responders’ diaries described the experienced feelings, behaviors, and social and environmental contexts of caregivers’ real-life situations. Six caregivers were invited to provide diary entries. Three caregivers responded by providing detailed reports of their daily caregiving experiences. Themes generated from the diary analysis were similar and supported the themes that emerged from the in-depth interviews. The major theme that emerged from the diaries was caregiving burden. All three caregivers described long hours of care and high-intensity care for their family members with dementia. Caregivers were exhausted and overwhelmed by long hours of care and by the level of intensity they provided for the seven days of diary entry. One caregiver reported lack of sleep due to high-intensity care and other family responsibility. Despite this, caregivers seemed to maintain a positive attitude towards their caregiving role. Caregivers also described the lack of resources and reliable help from the community. The difficulty and hardship that was experienced from their caregiving seemed to relate to the lack of resources and support services in their community. These diary entries were very useful in recording routine and everyday dementia caregiving processes that are otherwise unnoticed if not documented.

Discussion

This study delved into African American informal caregivers’ lived experiences to understand their unmet needs and challenges, providing a detailed interpretative phenomenological account. In-depth interviews and diary entries provided deeper insights into their caregiving experiences.

The findings of the study revealed that the African American caregiving role is complex and multifaceted with a broad spectrum of experiences and perspectives. African America caregivers described facing demanding and stressful caregiving responsibilities, although the majority of participants in this study reported good health. This is consistent with other studies that reported that African American caregivers report less mental and physical health but garner rewards from caregiving than non-Hispanic White caregivers (Cuellar 2002; Haley et al. 2004). Most of the participants in the study reported good health. Possible reasons why most of the participants reported good health include sample of participants are well educated, have an average reasonable income, good access to healthcare, and African American caregivers often report positive aspects and less likely to report negative aspects with their caregiving (Schwartz et al. 2021). The unrelenting, demanding, and incessant nature of caregiving causes unexpected sources of stress and burden for families. One explanation for the reported burden of dementia among caregivers is that 80% of the participants in this study were fully employed which can complicate the caregiving responsibilities. Congruent with previous findings, African American caregivers are extremely involved in their caregiving roles providing long hours of care and high-intensity care in addition to their full-time employment outside the home (Dilworth-Anderson, Williams, and Gibson 2002; Pinquart and Sörensen 2005). While previous studies have suggested that African Americans received significant help or support from other family members (Sterritt and Pokorny 1998), this seems not to be true in the context of this study. Most of the caregivers indicated that the availability and extent of support from other family members were limited. Caregivers also reported reluctance to disclose a diagnosis of dementia for fear of discrimination from other community members, which added to the caregiving burden. Caregivers reported that family members considered dementia as a normal aging process or refused to recognize the diagnosis of the condition. Studies have shown that minimizing or denying the existence of dementia delayed caregivers to seek help from outside, caused people with dementia to be neglected and impacted people with dementia not receiving treatment on time (Yang et al. 2022). Research has shown that early diagnosis and interventions of dementia will significantly delay dementia severity (Rasmussen and Langerman 2019).

African Americans’ cultural tradition of familism, filial obligation, and the sense of responsibility to respect and care for their older parents is an important characteristic of their caregiving experiences. Caregivers placed high values on familism, which refers to a cultural value that emphasizes strong interpersonal relationships within families for instrumental, emotional, and material support (Flores et al. 2009). Because of this strong cultural perception of caregiving among African American families, African American caregivers are less likely to place PLWD in a long-term care facility and wanted to provide home-based care for PLWD as long as feasible (Intrieri and Kurth 2018; Napoles et al. 2010).

Caregivers also expressed concern about the lack of community-based support and their ability to access resources. In addition to the lack of caregiving-related resources, many participants in our study identified other challenges such as perceived mistreatment and lack of understanding by healthcare providers, and lack of information regarding dementia as a barrier. Lack of knowledge of local resources and support programs was a significant barrier to caregiving and limited caregiving responsibility. Because of their limited knowledge about dementia, caregivers found it extremely challenging to identify help within their communities.

The results of this qualitative study revealed that caregivers desire more community resources to assist with their caregiving responsibilities as reported in a previous qualitative study (Abramsohn et al. 2019). More specifically, caregivers desired culturally sensitive and authentic care in their community that can strengthen their caregiving roles. Caregivers acknowledged they did not know what to expect and felt blindsided when their family member was diagnosed with dementia. Interventions should be rooted in the lived experiences of African Americans taking into consideration their cultural and socioeconomic backgrounds. Caregivers also stated the need for caregiver support groups that are made up of their cultural and ethnic backgrounds. They specifically emphasized the importance of support from other African American caregivers because they provide an affirming space for them to benefit maximally from participating in such programs. Despite reporting low formal support services in their community, caregivers described the support they received from their local churches as a trusted source. Historically, churches have been a backbone of support for African American families. Caregivers turned to their faith and used church and worship services for support in times of distress. However, caregivers expressed their sadness because being diagnosed with dementia restricted the PLWD from participating in faith communities and familiar religious activities because of disinterest of the PLWD as well as lack of time. Dementia diagnoses resulted in PLWD and the caregiver in attending church services less often because of uncertainty about PLWD’s behavior, fear of embarrassment, and even stigma. Caregivers suggested that the church could potentially provide additional sources of support, for example, starting senior ministries to assist in elder care, offering daycare to allow caregivers to continue to attend church services and activities, and assisting with transportation.

Conclusions

This study adds to the body of knowledge and expands upon the existing literature about unmet needs and challenges of African American informal caregivers based on their lived experience. Study findings reveal that caregivers face numerous challenges caring for a family member with dementia. Findings from this study underscore the importance of furthering our understanding of the cultural values and norms that influence African American caregiving experiences and the specific cultural nuances that influence caregivers’ stress and coping mechanisms.

Study limitations

The use of a purposeful sample limits the generalizability of the findings to the broader population of caregivers. The small sample size of 10 informal caregivers may not fully capture the diversity of experiences within the African American caregiving population. The study was conducted in a specific geographic region (Oklahoma), which may limit the applicability of findings to other cultural contexts or geographical areas. The reliance on self-report data from caregivers may introduce biases or inaccuracies in the reported experiences.

Clinical implications

The findings highlight the unique challenges faced by African American informal caregivers in providing care for persons living with dementia, underscoring the need for culturally tailored support services and interventions. Healthcare providers should be aware of the specific stressors and coping strategies identified by African American caregivers to provide more effective support and resources. Tailoring interventions to address the identified needs and preferences of African American caregivers may improve their overall well-being and quality of life.

Research implications

Future research should aim to explore the experiences of African American caregivers in diverse geographic regions to capture variations in caregiving experiences across different cultural contexts. Longitudinal studies could provide a deeper understanding of the evolving needs and challenges of African American caregivers over time. Comparative studies examining the experiences of African American caregivers with those of caregivers from other racial or ethnic backgrounds could further elucidate the unique factors influencing caregiving experiences and outcomes.

Ethical statement

Ethical approval was obtained from the University of Oklahoma Health Sciences Center Institutional Review Board (IRB) prior to data collection. Informed written consent was obtained from all participants.

Acknowledgments

The authors would like to thank the family caregivers who participated in this study. This work was also supported in part by the Department of Health Promotion Sciences in the Hudson College of Public Health of the University of Oklahoma Health Sciences Center.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Hudson College of Public Health, University of Oklahoma Health Sciences Center [grant number: Departmental Student stipend award].